GA H&V Summer 2018 Newsletter

GA H&V, GBYS February Love Letters Blog Event- You've got mail- Letter #4

Ga H&V, GBYS February Love Letters Blog Event

You've got mail! Letter #4

For my February Love Letter to my daughter, Amelia, I decided to speak our love language......music. Besides, What's more romantic than a mixed tape?  Amelia and I's mixed tape would consist of the following 3 songs:

1.  "Love Is A Battlefield" by Pat Benatar. Amelia & I know how to love & know how to fight. We are so similar!  It's a hot/cold Aries meeting a stubborn/clever Libra. I love that she has that fight in her especially since she has to advocate for herself a lot with her hearing loss.

We are young
Heartache to heartache
We stand
No promises
No demands
Love is a battlefield
We are strong
No one can tell us we're wrong
Searching our hearts for so long
Both of us knowing
Love is a battlefield
You're begging me to go
Then making me stay
Why do you hurt me so bad
It would help me to know
Do I stand in your way
Or am I the best thing you've had
Believe me
Believe me
I can't tell you why
But I'm trapped by your love
And I'm chained to your side
When I'm losing control
Will you turn me away
Or touch me deep inside
And when all this gets old
Will it still feel the same
There's no way this will die
But if we get much closer
I could lose control
And if your heart surrenders
You'll need me to hold

2. "Diamonds: by Rihanna-Amelia & I use to turn the radio up & sing this song as we sat in Atlanta traffic with a long commute to the Atlanta Speech School for therapy/speech. We both love all things sparkly! 

Shine bright like a diamond

Shine bright like a diamond

Find light in the beautiful sea, I choose to be happy

You and I, you and I, we’re like diamonds in the sky

You’re a shooting star I see, a vision of ecstasy

When you hold me, I’m alive

We’re like diamonds in the sky

I knew that we’d become one right away

Oh, right away

At first sight I felt the energy of sun rays

I saw the life inside your eyes

So shine bright tonight,

You and I

We’re beautiful like diamonds in the sky

Eye to eye,

So alive

We’re beautiful like diamonds in the sky

3. "Girl on Fire" by Alicia Keys- I remember the day she started singing this song & I recorded her. She (my deaf little girl) was singing clearly & on pitch. In that moment, I saw the beautiful results of all of the hard work she had put in at school to learn to listen/speak & it was worth all we had sacrificed as a family. 

She's living in a world, and it's on fire

Feeling the catastrophe, but she knows she can fly away

Oh, she got both feet on the ground

And she's burning it down

Oh, she got her head in the clouds

And she's not backing down

This girl is on fire

This girl is on fire

She's walking on fire

This girl is on fire

Looks like a girl, but she's a flame

So bright, she can burn your eyes

Better look the other way

You can try but you'll never forget her name

She's on top of the world.

So Amelia, you are strong! You are a our fire!  We will always be chained to each other's side. And remember to always shine bright like a diamond. 

Love Mom,

(Scarlett Giles is the GA H&V, GBYS Program Coordinator)

GA H&V, GBYS February Love Letters Blog Event- You've got mail! Letter #3

Ga H&V, GBYS February Love Letters Blog Event

You've got mail! Letter #3

To my son:

You have brought me so much joy in the last 16 years. Your spunkiness and strong will have both inspired me and drove me crazy! I joke that you have given me all my gray hairs. Your determination is inspiring. You have always had a smile and charm and way about you that lights up a room and draws people to you.

Your hearing loss is only one part of you. It hasn’t stopped you from being a great athlete or a great student. Most importantly, your hearing loss hasn’t gotten in the way for being the kind-hearted, caring person you are. You are created perfectly and God has created a perfect plan for your life; your hearing loss is a perfect part of his plans for you!

Although you have challenges because of your hearing loss, it has also taught you and me so much. It has allowed me to have more empathy and understanding for other parents and people.  I have met some awesome kids, parents and families because of your hearing loss. And the same is true for your father, your brother and your sister. 

Thank you for blessing us and loving us the way we love you, Caleb!

-Written by Kelly Cashion, GA H&V Parent Guide

Ga H&V, GBYS February Love Letters Blog Event- You've got mail #2

Ga H&V, GBYS February Love Letters Blog Event

You've got mail! Letter #2

Dear Lilia,

We look back on our journey, and we are in constant awe of you. Lilia you have continued to defy the odds. As we began our journey on starting a family, it was not as simple as we thought. Countless doctor’s appointments and two years flew by as we prepared our bodies to bring you into this world. We were told by our doctors and specialists; biological children may not be part of your future. We relied on our faith to help us through, and knew no matter the outcome we would be blessed. After a grueling and lengthy process, we were told you only have one embryo. The chances of this embryo “sticking” are not in your favor. Two weeks later, we go in for our blood draw and sure enough we were pregnant! Still extremely early, we followed up weekly and those weeks turned into months and our sweet Shorty was due on July 9^th, 2009. You had other plans, you decided not to come until July 17^th. After almost 20 hours of preparing and laboring, we hear your cries and we were elated. And after that we realized, we forgot to ask is it a boy or a girl? Girl! Lilia Shirazeh is here! She is perfect in every way.

You were in a precious pre-school when one of your teachers commented on noticing you were not turning around as quickly as before when she called your name. We had no reason to be worried, so we waited until we moved to schedule your hearing test at CHOA. Lewis and I never missed any doctor’s appointment, any school function, we missed absolutely nothing. We scheduled this hearing test at 5:30pm in the evening so we could both be there. And that was another day that our lives changed. Next thing we know; we are in a sedated ABR the next morning. As the audiologist and the pediatric ENT walked into the room and shared the results. They said words that we never imagined we would hear. We were stopped cold, and life stopped. We second guessed everything we had ever done. What did I do wrong, while I was pregnant? Was it the IVF? Was is the football games we took her to, or was it the band concerts we attended? What happened and why? We tried so hard to get you here, and we failed you? We mourned and grieved what we thought we would never have, and we were thrown into this new world. Will she be able to speak? Will she be able to go to school, to college, and what will her future look like? She can’t hear??!!

You took every doctor’s appointment, every blood draw, every therapy session, every fitting, and surgery like a rock star. We were in awe of you. You were 20 months old when you were diagnosed with hearing loss. You were fitted with hearing aids, and on New Year’s Eve 2010 we got the call with our answer. You inherited a gene from both me and Daddy. Your hearing loss was due to Pendred’s Syndrome. This meant you would have a high probability of completely losing your hearing as you got older. Your right ear progressed to profound and in May 2011, you became a recipient of a cochlear implant.

You worked so hard. You took every therapy session in stride. You were enrolled in a special school and you worked so hard at the tender age of 3 from 8am until 3pm every single day. We will never forget you standing on stage, the day of your graduation and doing your speech, and we sat there with tears of pride streaming down our faces. And we realized at that moment, you could do anything. You were 4.5 years old. That day would not have happened without Lilia and the amazing teachers, therapists, audiologists, doctors, and incredible group of amazing families we met along the way. Lilia’s dream team. Mommy and Daddy’s dream team.

You are now 8 years old. Nothing has ever slowed you down. You relish in the fact in teaching your family and friends about your special ears. Your confidence and your acceptance of who you are is something I wish I could bottle and share with the world. Your kind heart is infectious, and your smile lights up a room.  You love your family and friends. You love playing outdoors, music, cooking, reading, dancing, ballet, and singing at the top of your lungs. Your violin teacher is impressed with your ability to hear tone and to read music. You continue to thrive as a student at the Atlanta Ballet. You are the best big sister, and an incredible example to your twin brothers. You are also a role model to one of your brothers who also has Pendred’s. You continuously amaze us.

This past fall you auditioned for a tiny part in the Nutcracker. You were chosen to play one of the mice. On a remarkable December snowy evening in Atlanta, we sat on the second row at the Fox Theater and through our tears you make your debut. You did it! You never looked back, and you worked so hard to get there. Thank you God for the many blessings that been woven into our lives because of this hearing loss journey. Thank you dream team. Thank you Phonak and thank you Advanced Bionics. Thank you Lilia for your relentless focus, for your strong will, and thank you for introducing us to such an incredible world through your eyes and special ears.

Love always and forever,

Mommy and Baba Joon
(Laila Lawrence "Mommy" is a Parent Guide with GA H&V, GBYS Program.)

Ga H&V, GBYS February Love Letters Blog Event You've got mail! #1

Ga H&V, GBYS February Love Letters Blog Event

You've got mail! 

To our precious Alec...the "baby" of our family,

 Alec, for so many years I prayed for a child to complete our family.  God picked you out just for me and he had you grow in my heart.  When I received the phone call that a young woman had selected me to be your mommy, it was one of the happiest days of my life.  On June 28, 2001, the moment you were born the doctor immediately placed you in my arms and I knew that my life was forever changed for the better.  My baby boy...I made a promise to you that day, that I would place you before myself, be your biggest cheerleader in life, we would laugh endlessly, I would lift you up in times or sorrow, fight for you...lay down my life for you.  That day, God knew that I would make those promises to you...and HE knew that was why he had picked me to be your mommy.  There would be obstacles that you would face in life but we would face them together.  From the moment that I heard the doctor's say the words, "deaf/hard of hearing", I looked at it as a blessing.  I believe that God does not give us more than we can endure and through every challenge we face there is a lesson to be learned and you then have the opportunity to bless someone else.  Little did I know that God would use you to teach me too.  Through hours and hours of therapy...private schools...special education...deaf/hard of hearing specialists...speech...surgeries...etc., I watched you grow and learn and succeed.  Success was never an option for you.  The determination that you had within you was admirable to everyone who met you.  I didn't have to teach you to do your best...give it your all...not take "NO" for an answer.  My sweet boy, you had those gifts in you all along...you taught me.

Look at you now...16 years old...driving...a fantastic percussionist...marching with the East Coweta Marching Indians, one of the most well-known marching bands in the state of Georgia...invited to Georgia Tech for a summer Engineering program...Advanced/AP student...I could go on and on.  Alec, you are a role model for all children who are told that they won't be able to do something because they are different.  Of all the accomplishments you have achieved in your 16 years, what I am most proud of is that you embrace your differences and teach others compassion, acceptance and kindness.  I thank God every single day for the gift of you.  I am so excited to watch you change the world.  

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11

I will love you forever, I will like you for always, as long as I'm living my baby you'll be...
...Mom

Janne' Sharpe is a Parent Guide for GA H&V, Guide By Your Side Program

Georgia Hands & Voices, GBYS Feb. Love Letter Blog Event

Georgia Hands & Voices

Guide By Your Side

February Love Letters Blog Event

February, the month of love, is a perfect time for parents to write a love letter/note to their children who are Deaf/Hard Of Hearing to let them know how 

inspiring, amazing, & special they are!

We would love to share them on our GA H&V, GBYS blog. http://gagbys.blogspot.com/

Email love letters/notes (a paragraph is just fine) to Scarlett Giles, GA H&V, GBYS Coordinator sgiles@doe.k12.ga.us.

 Email letters anytime between February 1^st & February 28^th. Frequently check our blog as we will try to upload letters 2 to 3 days after you email them.

"So this blog is not about my hard of hearing child and his successes in spite of his hearing loss; this blog is about me and the present day experience of watching my little boy grow up…"

I have been hesitant to write anything on our GBYS blog in the two years we have had it up and running. I have been thinking and analyzing what exactly I was hesitant about. I think it has to do with my sense of vulnerability. I love to talk and carry on conversations and I am not afraid of opening up with people. However, putting my thoughts and feelings out there for anyone to see is a little intimidating.

 If I am being completely honest with myself, I would admit that there is a bigger reason. And that has to do with the stage of parenting I am currently in. Parenting teens...yikes! Actually, it has been very rewarding watching these little babies of mine grow into their own unique individuals (despite the moodiness and typical teenage ways!). This is the real hesitation of blogging; I have to be careful not to cross the line of what is me and what is them. My son would not mind me sharing that he has severe hearing loss that he wears two hearing aids and that he was diagnosed at age 4. He would not mind me sharing that he is a sophomore in high school that he is bright but does not always feel like studying and doing homework. He would not mind me bragging on him a bit that he is a pretty good baseball player and played on JV and Varsity this year and is now playing on a travel summer team. OK, OK, he probably would mind me bragging on him! But he is no longer a child and I don’t think it is fair to share the struggles he has had due to his hearing loss. It is too personal to share his feelings, fears and challenges of being a teen with hearing loss. He is a separate individual from me and that is his “stuff” to share with whoever he chooses, when and if he chooses.

As all mothers experience, it’s sometimes hard to let go of our little ones and it can be difficult to not always be in charge and to realize that you no longer can or should be making all decisions for them.  Or to remember to let them do things for themselves even if they make mistakes. It’s such a strong urge to protect our kiddos- especially if they have hearing loss. (Besides having my almost 16 year old son and another 8 year old son, I also have a daughter leaving for her freshman year in college so the struggle has been very real for me lately!!) 

So how can I blog about hearing loss without stepping in to my son’s personal territory? That is what I have been thinking on before sitting to write this. I can go on about my fears of letting my son go out into the world without me there to protect him- what if someone doesn’t realize he can’t hear them very well? What if he loses his hearing aid or something isn’t working and he lives too far away for me to take care of it? What if he takes off his hearing aids at night and doesn’t hear something going on while he is sleeping? The list goes on and on… But, honestly, it doesn’t matter if a child has hearing loss or not, I believe mothers will always worry about letting their children go. Letting go is the next step in my parenthood and, although difficult at times, it is also exciting and fun to see the people they are becoming. So this blog is not about my hard of hearing child and his successes in spite of his hearing loss; this blog is about me and the present day experience of watching my little boy grow up…  

Kelly Cashion

Parent

Parent Guide, Georgia Hands & Voices Guide By Your Side Program